davintosh

I have a mass on my right kidney, which was found somewhat accidentally during the diagnostic work done for the lymphoma in my jaw. That mass was assumed to be a typical renal cell carcinoma nodule. Treatment of renal cell carcinoma is usually pretty straightforward; partial or complete nephrectomy (removal of kidney tissue.) With that assumption, I went into the first meeting today with my urologist, Dr. Hofer, optimistic that being cancer free was just around the corner. Sure, getting there involved surgery, most likely a robotic-assisted laparoscopic partial nephrectomy, but compared to the chemotherapy and radiation therapy I’ve already been through, that should be a breeze. Relatively speaking, of course.

But, again the words “unusual” and “different” and “interesting” came up during the appointment. Dr. Hofer said my case would make a good trick question in a urologists’ exam. The curve ball that made him question the off-the-cuff diagnosis of renal cell carcinoma is the fact that I’ve already been treated for lymphoma, combined with what he saw in the PET scan; the mass just didn’t look like a typical renal cell carcinoma. He’s been doing this stuff for 20-plus years, and has seen a fair number of them, so he ought to know what they look like. He also said that lymphoma will occasionally grow on the kidney, and is easily mistaken for something else. But unlike renal cell carcinoma which is usually a contiguous mass and easily removed, lymphoma is more diffuse; surgical removal is less effective because the tumor’s boundaries aren’t well defined, and it often metastasizes to other organs.

So, given my history and the physical appearance of this particular mass, Dr. Hofer suggested performing a biopsy of the mass before diving in and cutting out a chunk of the kidney. If the biopsy shows that it is indeed renal cell carcinoma, then I’ll go back in for the partial nephrectomy. But if it turns out to be lymphoma, I will still have both my kidneys intact, and will go back to Dr. Bleeker and Sanford Oncology for more treatment. I’m not looking forward to that, but…

The biopsy will be done by one of the Sanford Radiology docs; they’ll use an ultrasound to guide a probe to the proper spot on my kidney to get a sample of the mass. Much less invasive than laparoscopic surgery, but will still require an overnight stay at the hospital. We don’t have a date just yet; should find that out tomorrow.

It’s a bit of a disappointment; here I thought I was a surgical procedure away from being done with this stuff, but now we’re faced with more questions and more diagnostics to try & get some answers.

Wow; thought I hit publish on this one already. Now it’s old news (so I guess that would be “olds” instead of “news”?) I got some really good news from Sanford Oncology following the PET scan two weeks ago; the lymphoma in my jaw is gone!

I’m still not out of the woods, but it’s definitely a step in the right direction. There is still the mass in my kidney to be dealt with, so I have an appointment with a urologist in a couple of weeks to talk about the options for getting that removed (more on that when I know more.)

As for the lymphoma, since things are clear, I only need to return to the oncologist in three months for a checkup, then go back for another PET scan in six months.

Life is good. God is better.

It’s been a while since my last update, so I suppose I’m way overdue for another. Actually, this post was started weeks ago, but it never seems quite finished, and instead of just finishing it, I find myself going back to it again & again and revising big chunks of it. Even the post title has probably changed a half-dozen times… Probably not the most efficient way to get the job done, but… It may have ended up a little on the wordy side too; just a warning. Good thing I don’t charge by the hour or by the word.

My last post ended with the results of my second PET scan in late June. While the procedure was a little rough, it yielded some good news; we had gained some serious ground on the cancer in my jaw, and we were ready to roll into the next phase of treatment, radiation therapy. Those treatments weren’t much more fun than the last PET scan, and even now, seven weeks out from my last treatment, I’m still feeling the lingering side-effects. The positive side of this in between time is that I haven’t even seen the inside of a hospital, clinic or infusion center since July 25 (happy dance!) My next appointment is for blood work and a third PET scan on September 18, followed by a visit with my oncologist to go over the results. It’s been really good to not be picked on for a while after about 17 weeks of being poked, prodded, gouged, scanned, pumped full of toxins and and being irradiated by a linear accelerator. Recovery from the radiation seems to be much slower, but I’m finally starting to feel closer to normal (whatever that is; I think I forgot.)

To recap what has happened since that last scan…
Read the rest of this entry »

Another very tardy update; the last few weeks have been, um… eventful.

Four weeks ago I had my first sit-down with Dr. McGraw, the radiation oncologist. There was a bit of a snafu in the scheduling, as he would’ve preferred to have seen me after my PET scan (which was done the following Thursday morning; more on that later) so he didn’t have a full game plan for treatment. He also said that he would be passing my case over to one of his partners because he was being deployed with the Air Guard and would be gone for the next three months. He did however take the time to explain things pretty well, so Yvonne & I were thankful for that. Knowing what he did of my case (two things you don’t want to hear from a doc; “I’ve been reading up on your case; it’s very interesting.” and “Wow, I’ve never seen [i]that[/i] before!”) he thought that a course of 18 daily radiation treatments over a span of three weeks ought to do the trick to completely eradicate the cancer from my jaw.

The treatments would be aimed at my jaw, and should only affect that immediate area; the side effects didn’t sound like much fun (and haven’t been) but he didn’t think it would interfere much with life & work (they haven’t, much) and should be effective. The daily thing was kind of a surprise, but he explained that doing smaller doses daily is far easier on the body than larger doses spaced further apart. I think I can accept that; I won’t enjoy it, but that pretty much goes without saying.

Following the appointment that morning I was also fitted with my Hannibal mask. They don’t call it that, but I will because that’s the first thing that came to mind when I saw it; it’s a form-fitted mask that helps to keep my head stationary during the radiation treatments, and also allows the techs to mark it up with reference points so they can be more consistent from one treatment to the next (which is better than marking me!) It’s made of a plastic mesh that starts out flat and becomes pliable when warmed up. The techs draped the warmed mesh over my face, then fitted it to a u-shaped plate that clamps to a hard plastic headrest. This isn’t mine, but looks an awful lot like it:

Since the tumor is on my lower jaw, they also want to keep my mouth from moving, so I was fitted with a mouthpiece, which is similar to a football bite-guard except it has a flat plastic piece in place of the part that would normally form fit around the lower teeth. After the initial fitting, the bite-guard was attached to the mask; the two combined, with the mask clamped onto the headrest, with me in a supine position on the table made for an extremely unpleasant confined feeling.

They did a quick CT scan of my head that first Tuesday, and in the few minutes that it took I nearly gagged on the stupid mouth guard. The bite guard obstructs my tongue’s movement, and that combined with the way the mask fits around the bottom of my chin made swallowing really difficult. And that combined with laying flat on my back on the table made for a few moments of near panic. I made it through the CT scan, and was so glad to finally be released from the thing I failed to say anything about that. Later I assumed that at some point we would take some time to get the mask & bite guard to fit better… Wrong assumption.

During our visit Dr. McGraw mentioned that he wanted to use that mask for my second PET scan in order to get more accurate results; I was still hoping that there might be some adjusting we could do with it, but when the nurse trotted that thing out on Thursday morning it was pretty clear that wasn’t happening. They got me ready and slapped that puppy over my face & told me to relax, the test would take 20 to 25 minutes. That’s when I nearly lost it.

I was to have nothing but water for six hours before the PET scan, and part of the prep involves drinking a thick sugary goop. That made for a bit of sticky gunk in the back of my throat that was hard to swallow. Add to that the bite guard in my mouth and the part of the mask wrapping under my chin and it was extremely hard to swallow. I’ve never considered myself to be claustrophobic, but I’d never been this restricted before (having my arms strapped to my sides didn’t help that either.) I knew I wouldn’t be able to make it five minutes, much less twenty-five minutes, so I grunted and kicked and did whatever I could to communicate to the nurse that it wasn’t gonna fly… She pulled the mask off and I nearly hyperventilated, so happy to be able to breathe again!

I explained the difficulty I was having, so she went to ask about adjusting the thing; she came back saying the word was ‘no’ on adjusting, but the doc relented on the mouth guard, and she pulled it off of the mask. The mask was still somewhat restrictive, what with the part that wrapped under the chin, but I somehow made it through the procedure by praying, reciting what I could of the 23rd Psalm (sure felt like the valley of the shadow of death!) and counting. The PET scan operates by making scans of small sections of the body, as if it’s a great big meat slicer (that thankfully doesn’t actually cut anything.) From the counting I determined that it took around three minutes for it to scan a section of my body; then the table I was on would move forward six inches or so, then it would scan the next section of my body. I lost track of how many times it moved, but if my one-second counts were accurate, it was about three minutes between each move.

Even with the counting and praying, there were still a few moments where I was this close to bailing out; swallowing was difficult, breathing was difficult, I was getting a kink in my neck from the plastic headrest, and having my arms & legs strapped down was just a bit too much. But I did make it through. Later on I realized another factor that made the earlier PET scan so much easier; Dr. Bleeker prescribed a sedative for me to take in preparation for the test. I think the mask would still have been a problem if I’d had the sedative on board, but I have no doubt that would’ve helped.

Later that same afternoon we met with Dr. Bleeker to go over the results… The PET scan basically measures the glucose uptake of cells in your body. To do that, a radiotracer is injected into the bloodstream; for cancer detection, the radiotracer used is FDG (fluorodeoxyglucose) tagged to glucose. Cancers absorb glucose differently from normal tissue, and the PET scan is able to detect those differences; in reading the PET scan, a radiologist reads the scan results and grades the “glow” of an area in SUV (Standardized Uptake Values). When I had my first PET scan back in April, the glow in my jaw was a 10; following chemotherapy it was 3. Considering the fact that normal or benign tissue has an SUV of 2.3, I’d say we’re heading in the right direction.

I started writing this post about three weeks ago, and am just now finishing it up. I could go on, and tell more about the radiation therapy, but I think I’ll just post this and start a fresh post on that topic. Pretty sure I can finish it in less than three weeks. 😉